Hi. John is currently 6 weeks out of treatments which ended April 15, 2009. Thank God the mucus issue is just about gone and he started talking again last week. He had a check up with his Oncologist last Friday and his blood counts were still a little low. He still has a lot of pain in his throat and mouth. He still isn't eating anything by mouth and getting all his nutrition through the PEG. He does drink water and Gatorade every day but hasn't started back on foods yet. I know everyone is different and recovers at a different rate but is it "normal" to still be in so much pain and not be able to eat by mouth? He has an appointment next Monday with his ENT. I guess I thought at this point after treatments stopped that he would be eating by mouth.

Things seem to change week to week and not day to day. I'm trying to be patient and stay positive. He does have prescription painkillers which he won't take. He does take liquid tylenol every once in a while. His ENT did give him a script for Nystatin for thrush which he does use. Have a great weekend. Wanda

Wanda, As you say everyone is different and most of us don't make any progress the first couple of weeks after tx end. My experience was that in the third week or so I started back on soft foods such as jello, soup, apple sauce. Then I ate whatever my throat would allow. I had my PEG removed 6 weeks after tx as I was able to feel confident about getting enough calories down to do away with it. Return of taste buds took considerably longer. I hope the ENT will be able to shed some light on this and in particular the amount of pain he is still experiencing in this throat and mouth. Hope it's not thrush. Keep us updated and good luck.

Hi Wanda,
Martin was the same as Bill and started on soft and liquid foods on the third week. He had things like custard, creamed rice, liquid porridge. The issue was mostly the taste then, every thing tasted salty so he had to add maple syrup to everything. The taste buds are 70% back 7 months on. So it improves but slowly.
As for the blood count, Martin was low for months after, until I went to the health food shop. A lady advised me to buy Feroglobin which has Iron and vitamin B12 and other stuff, and within a couple of weeks his blood count was normal. He also got a bit more energy.
Have a nice weekend

Wanda,

We all can recover at a different rate but generally the recovery is painfully slow. I'm sure you are keeping in touch with his RO but aside from that try to encourage him to start to use his swallowing muscles a little more each day and get him to try some of the softer type foods others have mentioned. At three weeks post, that's when I walked out of that dark tunnel, I was anxious to get back to normal so I was putting everything in my mouth. Note I didn't have a PEG so it may have been easier for me in the swallowing dept. I didn't enjoy the lack of taste or the time it took to "eat" anything and I still relied on my VHC to get my calories but slowly I started to taste more and drink less. It wasn't until 15 months post Tx that I really started to enjoy eating again but he's got to start some time and the sooner the better.

On the other hand, I am 14 mo.s post tx and can still only eat clear soup and soft cereal, mostly because of dry mouth and taste. I wasn't able to swallow pills or much other than water until about 4-5 wks out and had to see a speech therapist for help with that. My wife keeps pushing me to try more foods, which gets frustrating for us both. Patience isn't easy but that's what is needed.

I experienced really bad throat pain starting at the very last week of radiation and lasting for a couple months after. It was similar to a severe sore throat in the upper portion of my throat, mostly on the back and side of my throat where the tumor was(I assume due to the amount of radiation concentrated there). The pain was higher up in my throat though compared to the lower portion which was very sore during rads. It made me nervous, so I went in to have my oncologist check a couple times, but he always said he didn't see anything and that it was from the radiation. This definitely delayed my eating & drinking progress, but the pain did eventually go away completely. I remained on the patch and liquid Roxicet until the pain went away. Thank God for the feeding tube!

My husband, Bob, finished rad & chemo on 9/12, no surgery. Post tx he had such thick mucus, gagging, and vomitting that he was unable to take in any appeciable amounts of nourishment until Dec. Once he started increasing his diet, it went quickly, which was a great relief. RO wanted to see diet advance on at least a monthly basis, even if it was slight. Peg was removed 4 months post tx.

I was very worried that he would never eat again but the advice I got here was correct. It takes some patients a very long time. Bob can now eat most foods, except spicy. The advice about recovery requiring a full year, was also accurate. Expecting too much too soon only sets you up for disappointment. I'm amazed by the improvement in his condition even during this past month.

I am out of treatment by at least a year and a half, my throat still hurts and is getting worse the past couple of weeks. The oncologist called me today to see if the last script was helping with the pain, I told him no but I sure have been sleeping good.Better than ever with this stuff , xanax and a half a perc plusI am taking 900 mgs of neurotin too. Enough to knock out an elephant. The last time i slpt this good was when I was in the induced coma. LOL

I forgot the magic mouth wash is the last I take then hit the bed and have the TV off in 5 minutes.

Wanda, yes this is perfectly normal. It can take a while to relearn to eat. Keep encouraging him to drink alot it will help with the healing.

Please do not start giving your husband vitamins or anything else unless you run it by the doctor. A health food store employee is knowledgable but not trained like a doctor in what is most helpful in a cancer patients recovery. Ive read some old posts saying certain vitamins should be avoided. Be careful!

Step by step and day by day slowly he will recover.

Hi Wanda and Christine,
The reason i resorted to the health shop is because after martin fainted and broke his ribs because of low blood count, the only thing the hospital team said was "oh that must hurt". Nothing was prescribed to help restore the blood count and no advice was given apart from try and eat more.
What i failed to say is the mother of the lady at the health food shop was also recovering from chemo and TX (breast cancer) and she said he oncologist had recommended it. That reassured me.
However if your oncology team is better and recommend something do go for what they say.
All the best
Cecilia

My first real meal was about five months after the end of radiation (Family wedding reception in fancy Chinese restaurant in NYC), and it was still a long time before I ate regularly.

I want a meal . A real meal. Don't care if it's chinese, japanese . korean , german just anything but roadkill unless its fresh killed

Jim,

Since I bike so early in the am I see a lot of fresh rode kill so I'll keep you in mind if I come across something that looks especially pulverized. lol

We have a chef here who prides himself on cooking roadkill. I haven't taken to it though. I wince every time I see fresh road kill when I am driving.

Wanda, What did the ENT team say? Hope all is ok.
Cecilia

I was driving through a national forest in New Mexico when a Kaibob squirrel ran out and I hit her. Can't get much fresher than that! My pets, RatHarriet and Pumpkin the hedgehog, and I dined on Roadkill Jambalya that night.

I'm a year out of tx and 11 months out of surgery and I still have issues eating...but at least I'm eating. I eat in public now more then ever, thanks to Jim and Christine's encouragement...Taco Time super soft taco baby...hold the roadkill.

I've been eating so well lately though I finally had my doc take out my feeding tube, just as as he was removing a section of the titanium plate and screws in my jaw...unfortunately he also removed more tissue further disfiguring my lip and making it harder to eat. I'm told it'll stretch and be back to "normal" though. I still have pain though and am hoping I can get off the pain meds soon.

Eric, I seem to have my upper lip drawing into my mouth. Maybe I can get it removed part way ans send it yo your Dr to rebuild yours. LOL Have a good day.

Eric,

I didn't really become satisfied with my taste and saliva until 15 months post Tx and even saw a slight improvement 24 months post so don't get discouraged.

I now eat and drink anything I ever did pre cancer and taste them all almost normal. I do lack the subtle taste distinctions I used to pride myself on, kinda like a food critic thing, but believe me I OK with where I am.

The drs. told us that the spit glands do not come back because of the radiation. Is this true or have other had theirs come back?
Pat

Eric, thats so encouraging to hear you are doing so well with your eating. Sorry to hear about your latest setback with the recent surgery. Healing always takes time. Cant rush those things.

Congrats on the PEG removal!!!! Thats a big milestone, you should be feeling so much better without it. I remember when mine was taken out, of course after my inital shock at the pain. I stood up and it felt so amazing that I could finally stand up striaght again.

Best of luck with your continued improvements

Pat, it takes the body a long time to heal from the effects of radiation. It can take about 2 years to bounce back to nearly the same as before. Most OC patients will carry a water bottle with them for years. I was one of the lucky ones and my saliva is very close to normal and I do not need to always have a water bottle. Just remember.....everybody is different.

David, Christine, Jim, you guys are awesome thanks so much for the encouragement. I was/am nervous about not having the peg tube, I cheated though and had it taken out when under general anastesia when they were taking out the screws and some of the plate in my chin.

About the only thing I'm struggling with now is the chemical issue and that's getting better since they got me on steriods. I need to get off the pain meds too...not looking forward to it as I know I'm addicted, but I've kicked it before I can do it again.

Anyway you guys rock and I appreciate the hell out of ya.

Eric

Pat,

Without knowing more about your specific situation and exactly where and how much radiation each of your salivary glands received only your docs would even guess at that question and it may only be a guess for them as it's just near impossible for anyone to know how we will recover.

As Christine said the recovery can take all of 2 years and I wasn't satisfied with my saliva and taste until 15 months post Tx and I even think I saw a further improvement 24 months out so just sit back and relax and just don't listen to anyone that tells you dome and gloom stories and see what happens to YOU.

My Dr told me after I asked point blank about saliva, that I was right and it probably never return. I't almost 2 yrs now or will be Aug 3rd.

Pat, my saliva out put has come back pretty darn nicely. I had one of my glands removed via surgery but can go on walks now and other outings without having to have the bottle of water at my side. That was certainly not the case for several months following the end of tx.